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  1. #1

    Just joined and scared AF about bulbar

    Hello everyone! New member hereó> one with a crippling ALS obsession which began in April 2019 with body wide twitches. Was cleared by a neuro with a clean exam and saying an EMG was not required. Worked on some CBT and felt finally free.

    Fast forward to these past couple days, Iím no longer free. Long story short, 40yo otherwise healthy female. The past couple of days I have felt a strange sensation in my throat. Itís almost like swallowing is not coming naturally for me, like my brain forgot how to do it? And of course then I also feel like Iím clearing my throat a lot, I am aspirating food or water more, and I have twitching/spasm/tightness in my throat area? And now my tongue feels ďoffĒ when eating food. I am obviously freaking out thinking the worst, cause thatís just what i do best!!! My speech seems fine, as I know Bulbar onset ALS usually starts with slurring, but I have noticed I stumbled a few times on words. Not sure if this is because I am so hyper focused on it all now. Please help! I canít go down this rabbit hole again... I am a mother of 3 young kids and the thought of leaving them just breaks me. Itís so hard to bare this sometimes. FU HA!!!
    Last edited by Ekr4eva; 04-03-20 at 03:19.

  2. #2

    Re: Just joined and scared AF

    You sound like me!!
    I've seen a neurologist due to the fact that I have multiple sclerosis.
    I started body wide twitching three months ago and am so scared too. Neurologist said he was absolutely certain I am OK, but still that doesn't reassure me.
    I have this swallowing sensation too, I think it's to do with anxiety, feel like I have something in my throat and have to keep constantly swallowing.
    Health anxiety is crippling, I hate it. I am sure someone else will be on shortly to comment.

  3. #3
    Join Date
    Nov 2018

    Re: Just joined and scared AF

    Please try not to panic? This has happened to me before and lasted for months on end; it only went away when I stopped bothering about it.
    ************************************************** ********
    Sometimes, it's better to light a flamethrower than curse the darkness. - Terry Pratchett

  4. #4

    Re: Just joined and scared AF

    What were some of your MS symptoms??

  5. #5

    Re: Just joined and scared AF

    Hi Ekr4eva
    My ms symptoms started with optic neuritis, where I lost the sight in my eye, and double vision. MRI confirmed diagnosis of ms 18 months ago.
    How are you doing now?

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